evolution

Thanks, will wait and see the neuro, get some abortives then start with the trial and error.

well bang goes that idea then, if im going to wake him up and still be none the wiser there is not a lot of point. I see a lot of trial and error coming :-/

In order for me to be able to manage this better, finding out how long my cycle lasts would be a good start. At the moment I figure it lasts around 5-6 weeks (from onset of shadows to end of significant twinges) with a peak of about 7-10 days, however I thought i was out of the woods until i lost the fight with some line marking spray. Im not sure if the cycle starts before the shadows or how long it ends after the twinges stop. To be honest im not sure about much any more :-/ The only way I have of finding information is to either experiment on myself or ask on here where people have significantly more experience than me.

Now thats my problem, all I have at the moment is imigran nasal spray and red bull so im not keen. Also Ive been having twinges all day today :-( so i think i'd better leave it for now. David am I right in thinking that you believe consuming alcohol before your cycle is over actually prolongs your cycle ? Does anyone else experience this?

Well thats sort of the reaction I expected, different folks, different strokes, I dont drink except for special occasions and then its white rum (bacardi) or lager. Obviously I dont want to go and neck half the bottle only to find out that he is not so asleep after all, is it worse the more you drink? or is it so obvious that you only drink a little bit? People may differ but with a bit of help i can make an informed decision as opposed to a blind one. I like the russian roulette comparison because thats how nervous i am about doing it but I really feel the need to document it so im better prepared for next time.

Hi peeps, Im trying to work out how long my cycle lasts, as ive always thought they were sinus infections id never really worried about it as long as they went. I keep seeing this beer test thing pop up so im making a few enquiries and wonder if anyone could help me out a bit. Im pretty much starting from scratch with my knowledge apart from what ive read here and there. So a couple of questions for you. Does this work for everyone? does it matter how much you drink? will this show miosis? What i want to avoid is going a bit heavy and waking him up with a vengeance, or not going heavy enough and thinking its over when it isnt. Im nervous enough about testing the water but i need to find answers in order to better understand. Any advice would be appreciated.

Im very new to this myself as well even though ive had "sinus infections" for years. You may not realise there is a pattern but thats doesnt necessarily mean that there isnt one, try starting a headache diary, even if there isnt a pattern it might be of help to you in learning in how to avoid future attacks it might also be of assistance to the neuro. I have always found difficulty expressing how painful this thing is and thats one thing a diary has let me do. Getting diagnosed properly is a must though.

Im in cardiff, wales. where I live it shouldnt be too much of a problem to arrange my own O2, but it would be nice to get it on prescription. But I will go belt and braces otherwise. Im glad the husband watched you, sucking on acetylene is probably not a good idea

Quick update, have been to visit my GP today, I presented him with my headache diary and the report on oxygen. He had a quick glance through the diary and basically said its above his remit to prescribe oxygen or injectible sumatriptan and that I need to wait for the neuro to do the rest. He said I can have more nasal spray if I need it and thats about it. Frustrating as hell. I work in the construction industry and we have people like GP's, we call them jack of all trades, master of none. A handyman of sorts but with no specific expertise. For the first time ever I managed to get a medical cert with cluster headaches written on it. I think my cycle is almost over now so as long as I dont run into any solvents i should be OK. Lets just hope I can see the real doctors before he wakes up again.

Thanks for the info, its pretty much as I figured. Would be nice for an optician to witness the miosis so at least that way they cant tell me its all in my head.(because i didnt get chance to speak to the one the other day, I dont know what he saw or didnt) Im thinking about provoking him with alcohol and then getting another eye test but I dont think I have the courage to wake him up. I have tried to examine myself but they both look the same today or the difference is so small that I cant notice. Im not going anywhere, I have much information to gather and who else is going to answer my questions

The bit about the electric wires I liked, I think she would be part way there then. good explanation why couldnt I have thought of that The poem is going to be an ongoing process and when I find the words to describe it more suitably I'll change it and adapt it as I go. Today has been a better day, kip 1 all day, no red bull but the cravings for coffee will not stop. I didnt even think of the caffeine for the change in matters but now its been mentioned I can understand perfectly. Thanks for that. The doctors is all still going ahead as planned the employer wants a medical certificate and I want oxygen. I went to the opticians today because I want to know about the ptosis, miosis and any swelling of the eyelids. (the doctor asks me about them but ive never really looked in the mirror when in the middle of an attack. When i mentioned to the optician about the clusters he said that it was a standing joke about the circle between them and doctors. So how does the miosis thing work? At the moment im assuming that it is only evident during the attack which is why its never been picked up before? I dont know if any of you have a vision express store near you but Ive never seen anything like it, I thought id go there because they have up to date kit and walk up appointments, what a mistake. Its like a cattle market, they herd you from one room to the next where you finally see an real optician and he says four lines to you then ushers you off with a saleswoman to pick out your new glasses. My four lines were "Your a little bit short sighted", "are you sure thats not better?". "The middle of your eyes look suspicious so Im going to refer you for glaucoma but let me be clear, I dont think you have glaucoma" I guess they dont have a tick box for ch. then quick as a flash hes off to another room and im left with the saleswoman, no time for questions, just a shop full of glasses for you to look at. £25 for the test and an almost guaranteed sale afterwards. Dont get me wrong i may very well be a little bit short sighted (I dont think i am but there the supposed experts) but thats the least of my bloody worries. I was glad of the referral though, if I stack up enough maybe i'll see a neuro this side of christmas.

Ive tried to get her to read wikipedia and she wont even do that, besides these things nowhere near do this condition justice so ive wrote a poem. My monster I have a monster, he lives in my head, When he is awake, I sometimes wish I was dead He sleeps in a space, between my brain and my eye when he is awakened, ill have no choice but to cry he awakens like thunder, with fury and rage my eye is his door and my skull is his cage Today i will tame him, IÂ’ll show him whoÂ’s boss By the end of round 1, Its already a loss I cannot win, I just donÂ’t have the balls He swings back and for and bounces my head off the walls He makes me beg to an invisible force And keeps me that way until heÂ’s run his course he claws and he tears and he screams to get out one day he will, of that ive no doubt But thats no good to me, Ill already be dead The only way out , Is a hole in my head. Now that is not a headache.

Thanks for the help and support peeps, I need it at the moment. In my ealrier post I said the word remember what I meant is I lack the words to explain it. However, today I tried to explain what is happening to my sister who basically told me to take a pill and get over it, wasnt interested in knowing anything about it and as far as she is concerned the name says it all, cluster headaches - headaches in a cluster. I have decided to try and write an explanation for what happens, this is not a headache this is something else. I will do my best and post the results. Also the pain is in the lumber of my back, completely unrelated to ch but a pain in the backside literally I have decided that im going to stick this out for the rest of the cycle and just document as much as I can, I feel frustrated that it took so long for a diagnosis and if what I write helps me or anyone else in the long run then it will be worth it. My children may end up with this. I will be looking to bust the next cycle though and have already set the wheels in motion but I need to do this the right way, I feel I am right at the beginning of a steep learning curve.

Hi peeps, I had to break the news to my employer today, I had a weird experience yesterday after encountering line marking spray (solvent). Its effects were immediate, I knew I had to leave and leave quickly. Within 15 minutes I was home drinking red bull and it took around 10 minutes to ease but something was different, I dont know what or how to explain it but it was definately different. The "physical" symptoms were much worse, not so much the pain in the head (kip 6) but afterwards I was shaking almost uncontrollably, if I consciously tried to make it stop then it would but as soon as I stopped trying it would return. I was extremely emotional and I felt more confused than ever before and kept doing silly stuff like trying to put the coffee in the fridge and trying to put the sugar in with a fork, when I was typing I found i was spelling words incorrectly and making far more mistakes than usual. This is still happening today as I write now. (I have found difficulty in remembering enough to accurately describe what I am going through so ive taken to writing it down as it happens, remembering is probably the wrong word but I hope you know what i mean.) Anyway, I told my line manager that I suffer with clusters and he seemed very sympathetic, he hadnt heard of them but I think he could tell I was in genuine distress, I am now required to get a medical certificate to show that I can work (I fit solar panels, so there is an element of danger with working at height etc). He now has to report it to the MD who will decide what he wants to do, the thing is I have been working there for a week, I have a probationary period of 3 months and didnt disclose it in the medical history section as I wasnt aware of it at the time of interview. From a legal point of view I guess its easier to just get rid of me now rather than employ someone who may need regular time off. I have worked all my life since leaving school and have managed but this time it has hit me for 6, I cannot take much more, I feel depressed, Reality bites. I have made an appointment with my GP on Monday as I want to talk meds (Oxygen being number 1) and I havent heard anything from the neurologist as of yet but we are talking about the NHS it could be months. I also developed a lump at the base of my spine yesterday which is painful (like a bruise but it makes my leg twitch) so I can talk to him about that too. This forum has been a blessing and I dont know what i would have done without you. Thanks all.

Many thanks for the information on shadows, that explains a few things and has generally put my mind at ease. But the biggest thank you of the day goes to the tip about red bull, I dont normally drink red bull and dont particularly like it but I thought I would give it a go based on the advice given on here. When I left this morning I stopped in the shop and bought myself one. I would have had a min. level 6 whilst in work on my new job, drank the red bull at the first sign of it getting worse and it stopped, if anything the shadows got lighter. So many many thanks, you may have stopped me losing my job without having properly started it.